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The "Butterfly's Whisper" Blog

Welcome to my blog. I hope by sharing my own misophonia experiences, others who are frustrated with misophonia sensitivities will discover that they're not alone. I also hope that people who may not have misophonia will gain some insight about what it's like to have this condition.

Please feel free to post any comments or use the "Contact Us" page if you have any questions/comments you don't want to post online.

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New misophonia info

5/18/2014

6 Comments

 
For those of you who saw my last post, I survived the tornado warnings. (Woo hoo!) Albeit, sitting in a stuffy closet (despite how large it is) for an hour was a little unpleasant, but at least Tooki and I didn't wind up flying away and smushing a witch in Oz. LOL!

I've  come across several interesting articles/reports over the past week, some of which were forwarded to my by SenseHaven readers. (Thank you all for sharing.) The first of which was the paper for which I was interviewed by a student a couple of months ago. (Refer to my March 22 blog entry.) I was excited to see the final result and, with the author's permission, I'm sharing it here. It's called "Searching for Silence."

Some other interesting articles are: Wendy Aron's latest blog entry, "The cause of my Misophonia Revealed in Kid's Picture Books," two videos "Neurologic Condition Incites Rage Over Certain Sounds," and "Now hear this: Condition has patients on edge over noises," as well as two similar, but not misophonia-specific, articles entitled, "Silence is Now a Luxury Product," and "UTD's Callier Center Begins Trial for New Tinnitus Treatment."

I also forgot to share a radio interview, a newspaper article, and two research journal articles sent to me by one of the researchers from the misophonia fMRI study in London. The 10-minute radio interview of two of the researchers as well as the founder of the UK Misophonia Organization was aired by the BBC Radio and is entitled, "Misophonia, Mondegreens, and Miscommunication." The online newspaper article is entitled, "The sound of my boyfriend chewing makes me want to strangle him:" and is about a 20 year old model who has misophonia. The two research journal articles are, "Misophonia: Diagnostic Criteria for a New Psychiatric Disorder," published by PLOS ONE and, "Misophonia: physiological investigations and case descriptions," published by Frontiers in Human Neuroscience.

I also recently came across an interesting therapy that, according to Wikipedia, is a form of Cognitive Behavior Therapy called Rational emotive behavior therapy (REBT). Some therapists have been using it as a way to treat people with PTSD, but when I first read about it, I wondered if it's also something that might be able to help people with misophonia too. According to Albert Ellis, the psychologist that developed REBT, "One of the main objectives in REBT is to show the client that whenever unpleasant and unfortunate activating events occur in people's lives, they have a choice of making themselves feel ... frustrated, and annoyed,.." I won't go into an elaborate explanation here, especially since I'm not knowledgeable about the therapy, but you can click on the above link to read more about it for yourself.

I'm not sure REBT would be a good treatment for misophonia though. When I first learned about it, I thought it might be something to consider, since it seems to address a person's emotional reaction to outside stimuli, but after reading the Wikipedia explanation, I noticed one aspect of the treatment is "desensitization," which I've learned is a big no-no when it comes to treating people with misophonia. (We are confronted with triggers on a daily basis. Exposing us to more triggers is not likely to desensitize us.)

Well, it's a beautiful spring day outside. Time to enjoy it while it lasts!




6 Comments
Marija link
6/10/2014 10:48:34 pm

Hi Emlyn,

I haven't been online and active with my blog also for a while...
It's nice to see you again and read what you posted during that time.

I've just read "Searching for silence" and I have to tell how annoyed I am by the fact that Misophonia is addressed as a "mental disorder".

It's not a mental disorder.

There I said it. I feel better now :)

Reply
Joe
7/25/2014 12:32:05 am

Marija,

This response is coming almost 2 months late.. but I am bored at work and reading through some of the blogs I follow. I am actually the author of "Searching for Silence" and I would love to hear more about how to accurately describe Misophonia.

I found out that I have Misophonia about a year ago, which is largely why I decided to write this piece. My mis-labeling comes from my own ignorance... I did not realize that mental disordes and neurological disorders were different. Since reading your comment I've been doing a lot of reading and I now have a much better understanding of the science behind it.

I would be interested in hearing what you would have to say. How would you explain Misophonia to someone who knows nothing about? Is neurological disorder the most accurate way to describe it, or is there another term?

Thanks!

Reply
Emlyn link
6/11/2014 11:12:37 am

Hi, Marija! Glad to hear from you again!

I completely agree with you! Considering how many people are affected by misophonia and have different triggers, I don't think there's a common psychological/environmental situation between the thousands of people who have misophonia. I believe it has to start as a neurological condition...

Even the therapist I've been seeing over the past couple of weeks says that misophonia is neurological (something I doubt many psychologists would admit), although he also believes that there are experiential things in our lives that make the symptoms worse. (E.g. Stuttering is a neurological condition, but peoples' symptoms get worse the more stressed they get.) I'll try to write more about my session discussions in another post. They've been very enlightening. We've even discussed many of the things that he addresses with PTSD sufferers that apply in my situation as well. (He's really fascinated with misophonia, which he hadn't known prior to my seeking his help.)

I'm still trying to get the hang of practicing mindfulness meditation (at least it doesn't cost anything to do it on my own), but I'm optimistic that these relaxation techniques might help me (somewhat) lessen the severity of my symptoms.

One of the discoveries I made about myself is that over the past dozen years, my stress levels have been significantly increasing with no fun outlet for me to relax - which may have been exacerbating my symptoms. I also think the reason why I wasn't as sensitive during my school years was because I had LOTS of outlets to release my stress - like choral singing, hiking, theater tech, sculpture... Even hanging out with friends every day, none of which I do now. :-(

I'm hopeful that wherever I end up with a new job, I'll be able to start fresh and undo many of the bad, stressful, habits I've developed over the years and start enjoying the activities I used to do. Maybe then I can get my misophonia under better control. :-)

I'm trying to see if it is at all possible to get a copy of my fMRI tests so that I can be scanned again a year from now - hopefully after I get the hang of practicing mindfulness.

Reply
Marija link
6/11/2014 10:35:46 pm

The most important thing here is to remember that stress level play a major role in EVERY disorder, condition, illness, feeling etc. Am I right?
The relationship between the stress and our reaction is the same as every relationship between the stress and any kind of reaction. Does your tolerance to physical pain decrease while your stress level increase? and vice verse...
A person (with Miso or without) have to find a way to cope with stress. It will definitely help, but will it cure Miso? No.
I consider myself very "self aware" person. I've dealt with many things in my life, non Miso related. Self analyzing and determination that I simply must succeed in being "normal" saved my sanity, at least that's how I see it.
Yoga, meditation, prayer, different coping strategies and methods helped me with OCD and traumas I've been trough. After all, I'm only stronger because of my experiences and the way I went trough them.
But... nothing, I mean nothing helped me with Miso! There are some good days, when I'm happy and relaxed (as you already mention) and I tolerate Miso a bit better.... but then there are days when I'm feeling "normal, balanced" and there are days when I'm stressed when I tolerate nothing related to Miso.
The point is, with or without stress, Miso is still present. It might get a bit better while learning some coping strategies but cured with similar methods as behavioral therapy, I don't think so. At least in my case.
Every method will help you feel better about yourself and will help you with almost every aspect of life and I certainly recommend them for everything else... but Miso... please inform me if something good happens in that part of our life so I could try it.

Reply
Emlyn link
6/12/2014 01:44:43 am

I believe you're absolutely right, Marija! From heart disease to fibromyalgia. I even feel like the majority of my weight gain and sleepless nights was because I let stress get the better of me!

If I came across like I was saying mindfulness was a cure, that was certainly not my intent. I know it's going to take a long time for doctors/researchers to figure out how to actually cure misophonia. For me... I'm just hoping to drastically reduce my misophonia symptoms to get my life on track. If that takes meditation and making an effort to not be such a workaholic, thinking about my own well-being first, as well as trying to have fun in my personal life instead of avoiding potential triggers altogether, I'll do it!

I've just never done meditation before, so it's strange for me to make an effort to be relaxed. Working with a therapist who is genuinely interested in helping me with my misophonia, and who does recognize it as a neurologic problem, has enlightened me to things about myself that I didn't realize had seriously messed me up when it came to misophonia (something I didn't even know I had until two years ago!)

Every step we take along the path towards relief teaches us more about misophonia, and is one step closer to finding a cure! :-)

Reply
Marija link
6/15/2014 08:49:59 pm

I deeply recommend meditation and please find the kind that suits you and your temperament.

I remember when my goal was to calm things in my head just for a minute, meaning that I don't think about anything just for a minute. It was an impossible mission and an impossible goal. My head was everything except empty and calm. My thoughts were all over the place.
Years after, my thoughts and my inner life are organized in a good way. Looking at previous version of myself, I can't really comprehend how could I function like that.
Something I could tell you from my experience, is that you shouldn't force anything. Nothing will be solved by forcing yourself. Calmness won't come when you want it to come, now and instantly. It will come when you make the room for it.
You can think about it like you think when welcoming a guest in your house. What is the first thing you'll do prior the guest's arrival. You'll clean your house, you'll make sure everything is ok for the guest to come, you'll prepare clean towels, clean sheets... you'll make some room/space for that guest and make sure that the guest feel nice and comfortable in your house.
It's the same thing with your brain, make sure you tidy up your thoughts. Organize them, make some shelves in your mind where you can put them labeled. Make some room for calmness to come and stay because it'll feel comfortable there....

Anyway, pardon me on my English and the way I'm trying to explain you some of the methods. Of course, this is all just my experience and one of the ways I'm looking at this.

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    About the Author

    Emlyn Altman has been suffering with misophonia for over 40 years, even though she only found out about the actual medical condition much more recently. As frustrating as the condition has been over the years, her heightened sensitivities across all the senses considerably influenced her talents within the visual fine arts (particularly sculpture), music (singing, piano, and many other instruments), writing, and culinary backgrounds, as well as professional achievements as an architectural lighting designer. Her goal in developing this website is to promote more awareness about misophonia and help other sufferers as well.


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